I have been thinking a lot lately about patient advocacy lately. It is on my mind a lot — what does having a chronic illness mean for me and my career and my life as a patient?
Since my diagnosis in October 2018, I have spent many hours on the phone with insurance, infusion schedulers, and the doctor’s office trying to make it all work. I’ll be honest, some of my working hours have been spent in this way, because that’s the only time I can call. I will call during lunch break, be on hold for 30 minutes, and end up hiding away on the phone while I should be back at my desk. Early on, I started getting a sense that nobody was going to be considerate about the fact that I had a job. Insurance wouldn’t approve the infusion faster, the doctor’s office wouldn’t give me enough notice to tell my boss when the infusion was, and they didn’t mind keeping me on hold for extended periods of time.
There were many moments where I wanted to scream through the phone “I have a job you know? I may be sick but I have a CAREER and I can’t be calling you every day and I can’t call out of work in three days because that’s how much notice you gave me before my infusion”.
I have now accepted that this is just my life. I am 24 years old, I have only been in the “real” workforce for a year and a half, and now I have the part-time job of patient to add to my resume and workload. Do I feel like a real pain to insurance and doctors sometimes? Yeah. I hate calling constantly and asking for status updates when nothing has changed. Yet, that’s the only way to get things done.
I am so lucky to be well enough to work, I am thankful for that every day. I realize that may not last forever. Having a chronic illness can get in the way of your career in so many ways, and sometimes it’s the fact that being a patient takes away hours from your days and drains every ounce of energy you have. It isn’t easy. Having a chronic illness is never easy.
MS and Mimosas 